I’ve been talking a lot recently about the art side of my life here recently, which is perfectly appropriate; there’s nothing wrong with that. But I intended for this blog to also touch on other parts of my life, and especially my constant struggle with my health.
I’ll be repeating myself a bit for older readers, but it’s been nearly five years since my body started dramatically falling to pieces. There were many months before I had any idea what was happening at all, and really, I still don’t have the answers. Eventually it was determined that I have myalgic encephalomyelitis, aka Chronic Fatigue Syndrome, and mystery chronic pain for which there is NO explanation, except that it may be related to the ME. Most of you probably know all this already.
The quest over the last few years to find answers and, hopefully, cures or a least treatments, has been extremely frustrating and rarely fruitful. I have seen nearly a dozen different specialists during this time, and of course I have done tremendous amounts of my own research and reading about anything that seemed like it even might be helpful. The problem always boils down to the simple fact that no one knows what causes ME. If you talk to 50 different doctors or ME sufferers, you will get 50 different opinions about what the cause is, an what treatments might help. It seems I have tried nearly everything at this point, although I’m sure that if I did a little more digging I could learn about rarer, more exotic and expensive non-Western things to try.
In all the reading I’ve done, and in listening to my own body and seeing how it behaves and responds (or, often, doesn’t respond) to things, I’ve come to believe that ME is ultimately a neurological disease. There are several articles which come to mind that support this idea, but one of the things that really helped convince me was the documentary Voices From The Shadows. I will warn you, it is not a cheery piece. You may find watching it quite upsetting, especially if one of your loved ones has ME. But they talk quite a bit about the autopsies done of people who died of ME, and every single one of the showed brain abnormalities. Inflammation of the central nervous system if I’m remembering right, but don’t quote me on that. But it just seems to make sense that this really all starts somewhere in the brain from what I see in my body.
Because I believe ME is essentially a brain malfunction, I’ve been wanting to see a neurologist for quite a while, but without any more blatantly neurologic symptoms to convince my insurance, they wouldn’t approve a visits. But for better or worse, I’ve been tripping a lot lately. The first couple times you can write it off as just being clumsy or not paying attention, but then it started increasing. As the tripping increased, I also began to feel more disoriented while I was driving; mostly over longer distances and on the freeway… it just felt like everything was hurtling at me so fast I was having trouble processing it all, which was a bit alarming. Armed with those new symptoms, my insurance finally agreed to let me see a neurologist.
The first neurologist I was sent to refused to see me for very suspicious reasons that really, truly seemed to be based solely on me having ME. Well, I wouldn’t be the first ME patient to be discriminated against, and if the doctor was going to be such an asshole about it, I’m glad I didn’t even have to have an appointment with him. The second one I was sent to was very different. I loved him. He not only believes in ME’s mere existence, but also believes that it is a physical and neurological disease.
But, as he told me in the kindest and most caring way, there was absolutely nothing he could do for me. The only way he knows how to do any fighting against the disease is simply treating the symptoms, which he admits is woefully inadequate. He did a neuro exam on me just to be 100% sure I don’t have MS, or a brain tumor, or anything else they might be able to actually treat, but I passed all the tests beautifully. He made an interesting argument suggesting that fibromyalgia and ME are essentially the same thing, which was a new thought for me, and raised other interesting points and questions also.
His theory about what causes fibro and ME is that, essentially, our brains let in more stimulus than they ought to, and the amplify it even more. Which would explain the completely disproportionate pain we feel, our sensitivity to light and noise and smell, and plain old visual stimulation. Every time I go to the grocery store, I have to steel myself beforehand, because I know all the lights and people and noise and navigating through it all is going to suck. Unless someone comes up with a more sound theory, I’m going to stick with this one.
The appointment was informative, the doctor was so caring and kind; he went out of his way to answer questions and took a lot of time with us. He talked a lot about the problems fibro and ME people face with the medical community and public disbelieving us often. It was a very valuable appoinment just for the sheer validation from the doctor.
But, oh, I had not realized how much I was hoping he would be able to help me until I knew he couldn’t.
I don’t think there are any other specialists left to see. He was the last one on the list of anyone who even might have something to offer me. He was also the one I was holding out the most hope for. It felt like I’d finally reached the Wizard of Oz, and there was nothing in his black bag for me. Truthfully, it was heartbreaking.
For most of this health journey, I’ve felt that I’ve been mostly on my own; that it’s up to me to find a cure for myself, and I feel that more than ever now. The neurologist suggested that the medical community might have answers, and perhaps cures (or at least better treatments) within my lifetime, but that is a cold comfort right now.
This disease wears on you. Bearing it for a day is something anyone could do; it’s the relentless suffering with no relief that breaks you. Having only the vaguest, most nebulous hopes for it ever changing is a bitter, bitter pill. The last few days have been very depressing.
I have not given up. I will not give up. But having what seemed like the best chance of change and improvement disappoint so will require some time to bounce back from. For the time being, I need to metaphorically retreat and let my wounds heal before I can start battling again. I need time to shed some tears and allow myself to grieve the lost hope.
And whenever I write posts like this, I always want to say that I know it can be worse. I do not think that the things in my life are the worst things that have happened in anyone’s life ever. I know that. But I also know that other peoples’ pain and suffering doesn’t invalidate mine, and refusing to acknowledge them for being as painful as they are will do me no good. You can’t heal from something you deny.
So thank you all for listening to me, and special thanks to those who have been sending well wishes and prayers. Extra thanks to my friends and family for listening to me so patiently and lovingly. This too will pass. It will take time, and it may suck for a while, but it will pass.